Living life as a replacement pancreas for myself and my youngest!

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It is crazy to think that over 6 months have gone by since Nora’s T1D diagnosis – some days it feels like we have been her pancreas for years while other days we feel like we are just taking the first steps of this lifelong journey. Here are a few things we have learned along the way and feel compelled to share with the world:

Managing T1D for a child that cannot talk is like trying to hit a moving target while blindfolded. Some days we got it (YES!) and other days we are WAY off.

If she is having a temper tantrum we check her blood sugars. Big swings in blood sugars can lead to BIG feelings.

Just because her blood sugars are low doesn’t mean she is going to sit still or stop playing – find a phone or iPad STAT.

You can NEVER overpack snacks – they will always get eaten. Anyone with young kids can understand this one, now multiply it by 10.

Technology is a blessing, until it’s not. It helps you sleep better some nights and keeps you up other nights. It gives you comfort, but you’ll be on your phone more often then not checking her numbers and texting her care givers.

This post was recently shared on MyID’s T1D blog, but it is important to me to make sure it has a home on my blog as well. This is my journey…

Everyone has moments in life that rock them to the core, ones that change their thinking or put them on a whole new path. For some, those moments are joyous things like marriage or the birth of a child. For others, those moments might be shrouded in challenge like the loss of something or someone important. I think those challenging moments are essential to living because you never know what you are capable of without them. Like many people, I have had numerous positive and challenging moments that have stopped me in my tracks, but my daughters Type 1 Diabete diagnosis brought me to my knees.

I have been actively managing my own T1D since my diagnosis over 26 years ago. The management of my T1D has just been a daily thing to do like getting dressed or making my bed. I didn’t go out of my way to share the literal ups and downs of living with T1D. My mentality was “it just is what it is” but I also thought the act of sharing would result in people sympathizing or pitying me for something that was my reality. I didn’t want people to feel bad for me, I wanted them to see past my T1D and see me. Of course, if someone asked me about giving myself an insulin shot or taking my blood sugar levels, I would talk with them about what I was doing and why but for the most part I keep my invisible disease invisible.

This all changed when my daughter was diagnosed with T1D in December of 2018 at the age of 18 months. Suddenly, I realized that I couldn’t continue to be quiet about life with T1D. I realized that sharing is a critical part of the journey with this autoimmune disease – the more I share, the more people know, and the more they know, the more they understand what’s its like to live with T1D. Without this basic understanding, there is nothing – no support, no love, no fight for a cure.

When I tell people about Nora’s diagnosis, generally the first response is “she’s so lucky to have you”. I give a smile and a nod but think to myself “I’m lucky to have her”. Her moment has changed me – the way I think about this disease, the way I interact with it, the way I talk about it. Now, I’m shouting from the rooftops that we have T1D and that we will continue to rise up and do our part to educate and fight for a cure.

For those readers that are new to Type 1 Diabetes, it is a disease where the body attacks itself and can no longer make its own insulin. Insulin is a necessary hormone whose main job is to convert food into usable energy. People with T1D rely on getting this hormone in their body from an outside source through an injection or shot. It’s a fascinating (and sometimes frustrating) disease that requires the daily micro-management of food, exercise, and insulin. Even more fascinating is that there is a blood test that screens for T1D. This test looks at a persons blood for the autoantibodies that are associated with T1D. Positive results for these autoantibodies indicate that said person is at a high risk for developing T1D.

I first learned about this screening when Nora was diagnosed last month. Before then, I had no idea it existed. While in the hospital, her endocrinologist and diabetes educator asked me if we would like to have our other two daughters tested. “Thank you, but no thank you” was my immediate response.

Later that night when Nora had finally fallen asleep, I put more thought into why I said no and more importantly why I said it so quickly. I mean, our family tree is scattered with T1D. Besides myself, and now Nora, I have a cousin and an uncle who both have T1D. How is it that the youngest person in our respective core families came to be persons with T1D? Well, the exact cause of T1D is unknown and generally thought to be brought on by a combination of factors including environment and genetics. So if the cause of T1D is multifaceted, what is there to gain by knowing if my big girls have these autoantibodies? First and foremost – research towards the goal of finding a cure. But for us, with Nora’s diagnosis still being so very raw, there would be a lot of unnecessary worrying and second guessing of everything.

Would you want to know if you kiddo was at high risk of developing a disease knowing there was nothing you could do to stop it? Or would you rather soak in the moments of blissful ignorance? There’s no right or wrong answer, but for my family – we choose blissful ignorance…for now.

Whew! What a hectic and exciting couple of weeks we have had here in the McCarthy household. Here’s a quick run down of all the recent happenings to bring you up to speed! I took on another hobby. That’s right, I am the ever joiner and now am attending Baby BootCamp (a workout class) weekday mornings. I generally can’t walk during or after class, but LOVE that I am finally working out again and Little Miss sees me working out (three cheers for being a good role model!). As an added bonus, the other moms there are super nice and we get together play dates after class. Yay for new friends! We also had a big 4th of July weekend with my family visiting – so much fun between projects (check out my new DIY postings due up in the next week), swimming, general hanging out, and going to the aquarium. Finally, we announced Little Sister’s expected arrival in November and as such I have been planning non-stop to get everything organized.

Last week, when I had a few minutes between my to do lists, errands, entertaining Little Miss, and ensuring my house was in reasonable order, I briefly jumped on my phone to check my email, FB account, etc. After I was done, I started thinking about how technology has changed the way we parent – for better or for worse. I then thought “What a GREAT blog post topic!” As I started writing it, I was bored so I knew y’all would be – so Hubby suggested changing my point of view. So here we go, in true Kirsten fashion (a.k.a. a list), the Top Ten Reasons Why Little Miss and Little Sister will Benefit from Technology:

10. They will NEVER receive a paper cut because they had to read and/or review 12
different books to complete their research paper.
9. They will have learned the basics of typing before they go to Elementary school (but sadly they will miss out on playing Oregon Trail during Computer Class).
8. Their friends will not just be from their school, neighborhood, and/or after-school activities, but also from different towns, states, and/or countries.
7. They will be EXCITED to learn because technology will allow them to learn in a way that ensures their overall success.
6. Four words – Successful Family Road Trips.
5. More opportunities for them to figure out and learn about their passions.
4. They will need to learn, constantly adapt, and apply their social skills to ensure that the art of conversation is not lost.
3. They will have access to multiple points of view on any topic/issue and thus be forced to think through and decide on their own point of view.
2. They will always be just a Skype or Face Time call away from their grandparents, daddy (when he travels), or any other family member.
1. They will have career, community, societal, and family opportunities that their momma and daddy never had.

Now of course, the above list provides Hubby and I with exciting parenting challenges, but isn’t that what parenting is all about – overcoming challenges no matter their origin in order to provide your children with the best possible foundation to be successful in life.

I am not the type of person to just sit around and do nothing. Case in point – I was elected Vice President of my Neighborhood Association within 3 weeks of living in Dallas. Pause for effect… That’s right, Vice President, 3 weeks.

Last week, Hubby took the day off from work and I was thrilled – he hasn’t taken a day off since the holiday season (not even during our cross-country move). Little Miss was going to daycare that day so it meant we had an entire “Parents Day” – what to do, what to do?! In true form, I started to make a mental list of all the great projects we could accomplish and check off the ever-growing home ownership list. We will get so much done – woohoo!!

After dropping Little Miss off at daycare, I spent the morning prepping my side table for painting (first on my mental list) and observing Hubby playing around on his Ipad, while watching the World Cup (not at all on my mental list). Around 12:30, I asked him if he wanted to join me on a quick errand (also on the list!) and then maybe Home Depot. My goal – get him off the couch so that he can accomplish a tangible task from the mental list (which, oh by the way, I failed to share with Hubby) before the end of the day. His response “I think I am just going to stay here, do some more research (research, what research was he doing?!) and watch soccer.” My Type A, doer response to that was “Are you going to actually accomplish anything this afternoon?” I added a quick grin with the hopes that my blunt, and in hindsight harsh, statement would come across more as a joke than an accusation…didn’t work so well. He saw right through my sorry attempt and gave me the look – you know the one that says, “back off women, it’s my day off and I am going to do what I want”. I love Hubby to the moon and back for giving me that look when warranted – he keeps my Type A personality in balance.

We live in a world where we are constantly seeking out the ever-elusive “sense of balance” – work/life balance, financial balance, scheduling balance, etc. Not a day goes by where someone, somewhere isn’t trying to achieve his or her respective balance. I know I struggle with my new balance of being a SAHM (do I read to Little Miss enough, do I have too many DIY projects going on, am I keeping the house too clean?!) and a mom for that matter. Once I feel like I actually do achieve some sense of balance, it’s totally shot to hell either the next day or in many cases the next minute or hour.

For me, there is only one person in this world that has achieved any sense of “the best balance” and that is Little Miss. Each day, I am awestruck by something that she does or some look she gives me because it reminds me what is important in achieving life’s balance. It’s not crossing things off your mental list (although that helps!), its not living life by a rigid schedule (reading to her no less than an hour a day), or chasing the unattainable insert noun here. I have learned that balance is all about what you need on any given day in order to thrive. Get this – what is needed to achieve balance changes EACH DAY and sometimes even EACH HOUR within a day (my mind was blown…). Some days, it’s sending your toddler to daycare (and not feeling guilty about it!) so you can tackle that mile long list. Other days, its saying no to the play date and staying home to read and play with her all day.

Little Miss has taught me a lot about balance in the last 20 months and I cannot wait to continue learning about life from her over the next 20+ years!